This blog is about our 5 year old little boy Seth and his battle with Severe Combined Immune Deficiency (SCID). At the point of beginning this blog he is being considered for a second bone marrow transplant in order to save his life. My aim is to provide a real account of his history and progress through diary entries, pictures and videos showing that the boy makes the most of his bubble!. I, his mother, will be the main contributor to this page, but its not about me. Comment, ask questions, do whatever you please this is not my page but ours. I hope that this provides others with information on tackling a condition that 30 years ago would have lead to death. As well as giving family and friends a place to keep up to date with the news of his journey. #wearyellowforseth

Today: Turning 5 in hospital…..

Yesterday was Seth’s 5th birthday. He is in the Great North Children’s hospital in isolation. So at best he was allowed into a room on the ward to be with his dad, baby brother, grandma and me to have a little birthday celebration. I had ordered a cake for his birthday party (which he now won’t be having) so brought it with me along with ALL his gifts from family and friends.

Decoration by the play team in the hospital.

Waiting for the main man to arrive – his brother clearly overly excited

Opening presents

Happy with his Madagascar DVD

A fireman sam DVD – one that he actually doesn’t have!

Thats a green dog…..called Stevie after our dog at home

Caaake! The thing he was most excited about for his party – Paw Patrol Cake….even though he doesn’t like cake!

Dressed in his finest mis-matching joggers and t-shirt with toothpaste round his mouth, Seth managed to open his gifts, cut his cake, and identify that he had indeed received “loads” (how people found so many things this child doesn’t already have I don’t know!), before he began to go a little quiet and tired. He asked to go back to his room. This instantly made me concerned and not long after he spiked a temperature of 38.3 and spent the rest of the day in bed. His respiratory rate, blood pressure and heart rate where very high which is consistent with a high temperature. Despite burning up Seth was complaining of feeling cold. The birthday was over (for now).

Staff were in and out of his room most of the day and it was noted that the infection in his lungs may be fungal infection – which is very hard to treat in someone who is neutrophenic (no white cells, therefore no ability to fight infection). So they began antibiotics to treat this whilst they awaited the results of a BAL (Bronchoalveolar lavage) from Friday last week.

Seth made efforts to play with some of his presents and watch a DVD, but he was feeling so poorly he didn’t manage much. The doctor was concerned about his presentation and suggested that if his oxygen level began to drop they would need to consult the intensive care unit for early intervention. Luckily his oxygen level was the only thing that stayed good.

Although him going into the room to open his presents did not trigger his temperature, we decided that we will no longer bring him out of his room. It is too dangerous. The ward staff agreed and Seth is now in total isolation. This means that only Nik, me and one other named person are allowed in his room and we have to wear a gown to cover our clothes at all times. We have to check our temperature and if it is increased we are not allowed contact with Seth.

What is going to be hardest for Seth though is no contact at all with his baby brother. Seth’s always asks to see Hugo before anyone else when he comes in from school. Now they have chats and conspire via FaceTime.

Brotherly love

Seth and Hugo having a wee chat

The next day (17/02/14) – Seth had improved a lot. His temperature had come down and appeared to be consistently staying down. He was also much more himself, still quiet, but he managed to play today and eat a bit of food (which is good as he has gone from 11.5kg to 11.2kg in less than a week).

Today we have had a meeting with Seth’s main consultant. Dr Andy Gennery (click here to see a clip of Andy talking about BMT). Andy confirmed what we thought and the only option for us now is a second bone marrow transplant, this time it will follow 8 days of chemotherapy. But Seth is too ill at the minute to survive a transplant, therefore we need him to get better and then a transplant will be arranged as soon as possible. The marrow will come from either Nik or I because advancements in medicine mean that they can manipulate the bone marrow taking out what will cause harm and leave in cells that he needs and that will help him fight infection. This means that there is a longer period where he is at risk, but if it works we should not have issues with Graft Versus Host Disease

Seth is very lucky to have such wonderful caring supportive and strong parents and baby brother. You are all equally aspirational and my heart breaks to hear that Seth and you all are having to fight this condition. You are all in my thoughts and prayers and I thank you for the blog it has stopped many guessing games caused by social media but also answered many questions that I would not have been comfortable to ask directly in worry of causing upset. I’m sending you all our love and Happy Birthday Seth xxx

My heart goes out to you,as a mother you always think with can protect our children against everything,but in sad cases like this all you can do is enjoy every moment and live in hope,I think your an incredible person,stay strong with much love xx

I cannot believe that you are all going through this yet still remain so upbeat and strong. Absolutely wonderful parents who put many to shame with Seth, your little fighter and Hugo. My love and prayers are with you all xxxx

As a grandmother of 5 I know how much you and all your family adore Seth and how heartbreaking it is seeing him so I’ll – it must be very hard to juggle everything including your own emotions and I have so much admiration for you both- I know these comments do not help your situation but I wanted you to know anyway. Xx Deb

What a lucky boy he is to have such loving, caring parents, and a cute brother to chat and share his childhood with. Happy birthday for yesterday Seth. Stay strong little man. Lots of love and hugs xxxxx

Seth is never far from my thoughts Leanne. You are such a brave and strong family. Seths smiles are always a happy picture on Facebook and always make me smile. Sending you and your family all the positive thoughts in the world.xxx

Leanne, your blog has had me in floods of tears. I cannot even begin to imagine what you & Nik are going through. Seth is a gorgeous little man, he is strong & spirited just like his mummy. I have every confidence in the amazing professionals working with Seth that they will make him better & then you’ll have double trouble at home with him & baby Hugo driving you mad. To echo what everyone else has said, I think you & Nik have incredible strength & resilience. All of my thoughts & prayers are with you x

I’ll be sharing Seth’s story with many people and we will wear yellow for him. We will also be praying that God will help Seth get healthy for a second bone marrow transplant, and also that Seth’s body will not have any problem accepting the new marrow. God bless yall!!!

I know its a little late as Im just getting caught up on Seths entire story but I wanted to shout out a Happy 5th Birthday to Seth. Reading his story I admit is heart breaking coming from a mother of 3 boys. I envy your strength and Seth you are a true a fighter and a true hero. You are an inspiration to many out there who are battling such diseases showing them that all you need to do is fight through it..You are in my heart and prayers and I pray for your bone marrow transplant to work this time for. GOD BLESS AND God speed to you ❤

Your blog has had me in floods of tears. I cannot even begin to imagine what you & Your fanily are going through.. I cannot stop thinking about Seth and how he’s doing.. Please if there is ANYTHING I could do to help let me know!! I’d love to help in anyway possible. Sending love and prayers 💛💛

Happy 5th Birthday Seth! I’m glad you got to spend some of it with your family all there.
Leanne and Nik, thank you so much for the update. You are a beautiful example of unconditional love for your children. Praying continuously for you all and for Seth’s protection for his transplant. XOXO💛💛💛💛💛

Seth, a little late, just started following your story, what can I say that you haven´t heard, you´re just an awesome and brave boy. I wish the best for you and your family. Plus, you´re so blessed, your mommy it´s a real warrior. I know this is the 5th of more coming years.